Fire Chief Ben

Upper GI

Ben FINALLY had his Upper GI yesterday. Still waiting on the results from GI although there has been some confusion with the test. Praying it doesn't have to be redone because of a misinformed radiologist.

School Photos

At school Ben is learning to take turns and play with other kids his age... the kids are great with him.

While strolling around the room in his walker, Ben decided to make a pit stop to do a little painting.

Working on kneeling while playing with chalk. Ben appears to be hanging on for dear life!

Making a pumpkin during the Harvest Party

Ben and his class showing off their pumpkins!

Thanksgiving Signs

Thanksgiving is right around the corner so here are some signs for that too!

Sharing His Signs

Since Ben's primary language is Sign Language, we thought we would share some Halloween signs with his blog friends. And if you see Ben out and about this weekend, be sure to wish him a "Happy Halloween"!

Growing Up

Ben just got his school pictures back and I must say, these are the best ones he has ever gotten! And I just can't get over how grown up he looks in this photo. (As an added bonus, he is wearing his implant which is a huge surprise considering he doesn't want to wear it much at home)

Ben in his new glasses. After a lot of holding down his hands and struggling, we got him to wear them for the 2 seconds it took to take this picture. That has been the longest he has worn them since. Hoping in time he will realize the benefit of them and start wearing them more. But Ben will only do so on his own terms in his own time.

Misc Others

Ben's Upper GI was suppose to be yesterday, but was canceled due to his illness. He needs to be in optimal health for this procedure.

And Ben's glasses are IN! We will be picking them up tomorrow morning. If he is willing to wear them for more than 5 seconds, I will take a picture and post it.

Rough Week

Ben caught some sort of bug last week and over the weekend, his condition worsened. Whatever he had moved into his chest and made it very difficult for him to breathe. He was requiring a lot of oxygen at night, needing constant suctioning and was having these really hard, raspy, wheezy coughing fits. We were told from his Special Needs Pediatrician to take him to the ER at Childrens. After an exam and chest Xray, they diagnosed him with pneumonia/partially collapsed lung. We were then told he must be admitted to the hospital... which resulted in a horrendous experience at Children's.

An hour after being there, Mike and I insisted he be realized ASAP. The pulmonary floor was full as was the trach floor, so we were admitted on a general floor. That floor was not able to give someone of Ben's numerous/complicated health issues the attention/care he needs in a timely manner. He was much less at risk at home. There I can 'immediately' give him oxygen, 'immediately' hook him up to his oximeter (machine that reads oxygen levels in the blood and displays the heart rate) and 'immediately' give him breathing treatments, medicine, etc. Not to mention we were having to use all our own supplies and machines to feed him, suction him, and so on. We stayed long enough for him to get one antibiotic shot, an oral antibiotic started and a trial on a cough assist machine.

Ben, with the help of two kinds of breathing treatments and two antibiotics is doing much, much better (hasn't required oxygen throughout the night the past three nights) and unless something should change over the weekend, he'll be heading to school Monday morning. I am so thankful to have had the help of my mom and husband during this very difficult time. It so happened that our night nurse has been on vacation for 8 days. It made all the difference in the world having my mom there to help with Ben in the mornings and Mike in the evenings because Ben's care was really a two person job during this illness (he was fighting the treatments and wearing the Oxygen).